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Finally, a diagnosis.
The dermatologists’ office called, and thanks to the biopsy, we finally have a hard and fast, firm diagnosis. My mothers’ instinct and my medical digging were correct, Munchkin has Alopecia Areata. She does NOT have trichtotillomania, she is NOT pulling her own hair out. I no longer have to try to convince the dermatologist of that fact, and we can move on to other things.
In a way, I’m sad, because this is a bit more final. Last night she asked Dad to buzz off the remaining hair since it had matted so badly with more fallout and was causing her more grief than anything else. It didn’t take long since there was less than 10% of her hair left. It really looks better now, since everything’s smooth it looks like it was planned at least instead of little areas still trying to hang on. She has some fuzz on the top that looks like it might be trying to re-grow, but it doesn’t have the texture of normal hair, so I’m not sure what’s up with that. AA doesn’t have a cure. She can go into remission, but she’ll likely be dealing with it the rest of her life, especially given the extent of her fallout. So that’s not cheering for me, but having a diagnosis opens up a bunch of support for her in terms of organizations and things like insurance paying for wigs and things.
So today we have some good news in that we know 100% for sure what we’re dealing with. I’ve known in my gut for some time, but the confirmation is good in several ways. Monday we see the dermatologist again and start the process of deciding how far to go with treatments that may or may not be effective and could have some decidedly not-nice side effects.
A cute aside to all of this… I’ve been researching wigs out the wazoo for the last month. The wig I bought for Munchkin has been worn daily and it’s already starting to look a bit ratty. Apparently it’s really not good for wigs to be worn daily, it rags them out really fast. My best resources for wig information have been a website by a transgendered person, and COS-play websites. Between the two, I’ve found that I can probably get decent quality wigs for about $40 (I paid like $300 for the one she has) and we can style them (she likes to wear ponytails and braids) too. I’m going to order one or two from cosworx.com and see what we can do so she has several to rotate through. I’m just amused that the websites I’m going through for wig styling info for my kid’s medical advise are generall not safe for work. ::giggle::
In a way, I’m sad, because this is a bit more final. Last night she asked Dad to buzz off the remaining hair since it had matted so badly with more fallout and was causing her more grief than anything else. It didn’t take long since there was less than 10% of her hair left. It really looks better now, since everything’s smooth it looks like it was planned at least instead of little areas still trying to hang on. She has some fuzz on the top that looks like it might be trying to re-grow, but it doesn’t have the texture of normal hair, so I’m not sure what’s up with that. AA doesn’t have a cure. She can go into remission, but she’ll likely be dealing with it the rest of her life, especially given the extent of her fallout. So that’s not cheering for me, but having a diagnosis opens up a bunch of support for her in terms of organizations and things like insurance paying for wigs and things.
So today we have some good news in that we know 100% for sure what we’re dealing with. I’ve known in my gut for some time, but the confirmation is good in several ways. Monday we see the dermatologist again and start the process of deciding how far to go with treatments that may or may not be effective and could have some decidedly not-nice side effects.
A cute aside to all of this… I’ve been researching wigs out the wazoo for the last month. The wig I bought for Munchkin has been worn daily and it’s already starting to look a bit ratty. Apparently it’s really not good for wigs to be worn daily, it rags them out really fast. My best resources for wig information have been a website by a transgendered person, and COS-play websites. Between the two, I’ve found that I can probably get decent quality wigs for about $40 (I paid like $300 for the one she has) and we can style them (she likes to wear ponytails and braids) too. I’m going to order one or two from cosworx.com and see what we can do so she has several to rotate through. I’m just amused that the websites I’m going through for wig styling info for my kid’s medical advise are generall not safe for work. ::giggle::
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Comment by Mom on November 13, 2008 at 12:30pm
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Hi, you sound like where we were at about 1 year ago..finally a diagnosis, my daughter shaving what was left (she was 12) ,it was kind of a relief to do that, for her and us too I think, it did look better than the little hair she had left. And the fallout process was torture for her. I researched wigs endlessly, we did not continue treatment for her (she had the steroid shots for a while when the patches were small) the AA was progressing too fast we stopped "fighting" it if you will. It has been a rollarcoaster Ill tell you , for the most part things are pretty routine now, I TRY and be matter of fact /empathetic/ strong and not angry about the burden she has --sometimes we all plug along for a good while then my daughter has a low point and you know.. we get through it together.. I feel so sad about it sometimes.
Just an Idea, Iam not sure where you are but Childrenn With Hairloss is in Michigan and they provide 1 free prosthetic type HH wig a year, no financial qualification necessary. We have had one piece free and actually bought one at $600 and I would say they last about 4-6 months with a few trims needed. The nice thing about that type of wig for her is that they are Mono top with a poly edge to use tape , no straps, felt etc.. They have stayed on (you have to tape to bare skin we do on the temples) through soccer, volleyball, wind etc... even swiming (with bonding tape) . Also Hair Club does a similar thing for kids for free (we have not gone that route yet-- they are kind of far away. We also have had luck with Rene of Paris they have nome nice synthetic more youthful ,mono top (which looks more natural) they are $200-400 or so.. Iam not sure on your daughters age as I write this, but my daughter usually wears a pitete (sp?) ad a ave size in ROP fits her.
Amy
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Comment by theantichick (Shannon's Mom) on November 13, 2008 at 1:06pm
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Thanks for the tips. Shannon (Munchkin - I have been on the internet for ages and am in the habit of not using her given name online) is 11 and all this started right before 6th grade started this year. Perfect timing, no? She's a big kid (tall & sporty, not overweight) so a regular adult wig fits her fine. Her fallout started with patches on the side, so I needed to get her something even though we didn't know exactly what was going on for sure. We ended up ordering a wig online when no one in the area had anything that didn't look like "Dallas Hair" (big, poofy, 50-year-old-lady stuff) in stock. It worked out great, but she's been wearing it every day. (she wears a scarf from 4women.com around the house and on the weekends, but to school the wig makes her feel more confident and fit in) She plays sports (has been out this year because there's a gap in available teams with the city and no school-sponsored stuff until Jr. High) but is begging me to find her a league for volleyball and I'd been wondering what we'd do about the hair when she got hot & sweaty. (I was thinking a sports scarf in the uniform colors, personally.) All these things that we never give a second thought to when we have hair. :-/
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Comment by Lyndsey on November 13, 2008 at 1:29pm
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Not to sound out of the ordinary, but I'm so happy for your daughter. My daughter is 8 and experiencing alopecia on the top of her head in small patches at a time. We just switched pediatrician as our previous one said there was nothing wrong with her. I was like HELLO.. have you seen the top of her head.. the hair is thin like an infants. So, the switch began and we jsut had labs drawn to check on the thyroid and few other things and then when those are in we were told we would be sent to a dermatologist. Hope you find the support you need here. I'v eonly been on here a week and everybody has been so helpful answering my questions. Good Luck!
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Amanda - everyone here has been incredible. I am a consummate computer geek and have enough medical background to be a pain in the arse for a doctor, so I pretty much knew Munchkin had AA once the bald patches started and her pediatrician ruled out some of the other things like rheumatoid arthritis, lupus, and cancer. (Not that I really thought those were in the running, she didn't have any signs or symptoms of those, but you have to rule them out to start.) But without the diagnosis, some of the support groups online wouldn't even let me join. It was frustrating because I really needed to talk to people and get more information than the medical texts had. This community has been warm and welcoming and chock full of information and advice (without being pushy with the advice, they seem to know where the line is, too... they're GREAT). I would have absolutely lost it without these people.
The medical community has been frustrating the heck out of me, I have to tell you. I haven't even posted all the little things that have gone on that have driven me nuts. I hope things go more smoothly for you than they did for us. We ended up having to have a biopsy done where they cut some skin away from Munchkin's scalp and sent it off to a lab, before we got the real answer this morning. Up until now, the dermatologist has been saying Munchkin was pulling her hair out herself. Which is a serious disease that I don't want to minimize, but it didn't fit her symptoms. We go in Monday to have the stitches taken out from the biopsy and start talking about treatments.
Bottom line, research everything and don't let the doctors push you into something if your research and your gut are telling you something different. My mommy sense and my research have known for months what was up with my kid, if I'd listened to the doctor, she'd be on psychiatric meds right now.
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JeezLouise - Yes, I found your article about an hour ago going through some posts on the wig threads. Sounds fabulous, and I'm going to give it a try. Her wig is a straight razor cut style and I have a flat iron that has a wonderful variable heat setting that goes from barely warm in tiny increments all the way to freakin' hot, so I'll use that and give it a go. Thanks bunches for putting that up!
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Comment by Mukti on November 13, 2008 at 6:14pm
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Hello Shannon's Mom,
My hairloss was also started in 6th grade. It did grow back but then in high school I had patches here and there. Now after more than 30 years later I am totally bald! I've been like this for almost years now. I'm dealing better with it now.
I just wanted to tell you about the website www.naaf.com. They have several venders that have wigs to scraves to hats. Also have you to looked into Locks of Love...I think they will give a free wig for childern. There is another site to buy wigs that are cheaper...www.PaulaYoung.com. I don't know how durable they are. When I first lost all my hair I ordered a couple of wigs but they were too hot for me to keep on. I also had exterme body heat issues so I did wear the wigs. I now wear the BeauBeau scraves by Susan Beausang. Good luck with everything!
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